White cell count issues

[Deborah Deffenbaugh]

I haven't posted in awhile now about Alyssa post- transplant as she has been doing great.  We are almost at the 6 month mark now, using Soliris every two weeks, 1200 mg.  Unfortunately, she has recently encountered some new blood problems and I am wondering if anyone has any knowledge or expertise in this area.  Her white cell count has dropped to 1.4 (should be between 4-11)   and her neutrophils are 3 when they should be between 45-75%.  She is leukopenic and neutropenic, and the Doctors have no idea why.  She feels fine, just a little tired.  Since the transplant, her white count has been running low, usually around 2.8 or so but this is a significant drop. They are going to give her nupagin (sp?) shots to try to get her bone marrow to produce more white cells for the next four days and then recheck her blood.  She had just returned to Bed, Bath and Beyond to try working part time and now has to stop as they don't want her in public places.  Since Soliris compromises her ability to fight bacterial infection and the immune drugs compromise her generally, this low of a white cell count is very frightening.  I would greatly appreciate any input as I was hoping to never have this terrible knot in my stomach that now has returned.

[Dana M Simone]

What great news! Thanks so much for the update...the cellcept is exactly what they have been decreasing for Jack, and yesterday's blood work was much better. He is continuing with prograf and prednisone, too.

How awesome that Alyssa is so active and up on waterskis! I hope she is able to return to school soon. Coincidently, Jack is also planning a career in nursing; it seems a very natural choice....

[Deborah Deffenbaugh]

So glad Jack is back in school.  Alyssa hopes to go back to college and maybe get involved in nursing or something medical..she certainly has the experience level to help her get started. Once the doctors decreased her cellcept anti-rejection drug, and in fact took her off of it, her white cell level returned to normal.  Her hematologist mentioned that since Soliris is also an anti-rejection drug and has been used to prevent rejection, she may not need the regular course of anti-rejection meds.  Fortunately, her latest blood test had only one abnormality!!! (and it was only minimally off).   We were so used to seeing just about everything marked as too high or too low, we were thrilled with almost complete normalcy!!  She is still on 5 mg of prednisone and tachro for anti-rejection.  So there is hope for everyone struggling through weird blood lab levels...things will eventually settle out.  Alyssa now plays kickball and has waterskiied at our new house on the lake! So we are of course completely thrilled that she can participate in life again. Good luck to Jack in college!

[Dana M Simone]

Jack is almost at the 3-month mark and the same thing is happening. So far, they have decreased one of his anti-rejection drugs (a couple of times) and are watching closely.  On the bright side, Jack began life as a college student on Tuesday....he hadn't been in a classroom since junior year of high school and is really enjoying it!

[Kerri Grey]

I have a friend here in Australia who's son recently had a heart transplant and just the last week he is the same -  extremely low neutrophil count and again the docs dont know why...they are trying him on a different antirejection medication i think... i know this doesnt help you but just surprising how it has come up at the same time...clearly something to do with transplant (he is also coming up to 6 months post transplant).

[Amy Swarbrick]

Brody is not on soliris so it might not be the same but when Brody was still receiving plasma infusions he went awhile being neutropenic and leukopenic. Doctors also had no idea why and gave him a deadline for his counts to be up or he would have to have a bone marrow biopsy (I think that's what they called it). They thought maybe his bone marrow had just been exhausted trying to keep up with the hemolysis the ahus was causing. Luckily all of the sudden they just started coming back up. Doctors again didn't know why. I hope this will be the same for Alyssa. Glad to hear every thing else is sailing along since the transplant....it's music to our ears for all of us parents on here:)